Lyme Log: Treatment Suspended

After my last ER visit I contacted Dr. Lyme to let keep him in the loop. I also wanted to see if any of the medications I have been taking for Lyme may be causing my GI issues (which we have suspected all along).

I received a call back from the nurse on Tuesday letting me know that Dr. Lyme wanted me to suspend all of my Lyme treatment.

This meant stopping four of my medications: Bicillin (no weekly shots), Plaquenil, Malarone and Zithromax.

The last time I had any of my Lyme meds was the Saturday June 22nd before the ER visit Sunday morning.

Last week was my first week without a bicillin shot...and today would have been 'shot day' but it wasn't!

At first I really freaked out about stopping the Lyme meds. I was really worried about how far it might set me back, how much the Lyme might 'catch up', and how hard it would be to restart the meds. And, what if the Lyme meds are causing the GI issues? Then what do we do?

The nurses at Dr. Lyme's office are fantastic--they are knowledgeable and compassionate. When I jumped ahead to the question of 'What if'? the nurse said: "You can't go there right now. Right now you just need to figure out what is going on GI-wise and then we will go from there. You won't get set back in a way you can't come back. And the Bicillin stays in your system for a month."

And she's right. I think that after so much craziness last week with the ER visit and then the sudden, unexpected need to suspend my Lyme meds, left me a little overwhelmed at first. It all seemed to be strange timing since it was also my anniversary week. Was everything going to heck in a handbasket?

A little perspective and time always helps! By the day of my anniversary I felt much calmer and knew that it was out of my control.

I'm at a point now where I know that I have done everything in my power to move forward with the treatment. I know that my Lyme doctor would not stop treatment if he did not feel that it was necessary. He's also very cautious, which I appreciate.

I'm now trying to just enjoy the break from the meds. It might give us some sort of baseline to see how I am doing and where we are at 3 1/2 years into treatment. This is the first real break I have taken in 3 1/2 years. At this point I still have some antibiotics working in my system.

Emotionally and physically, the break feels really, really, really good.

I was starting to think that I was just a very depressed human being and had lost my joyfulness completely. Interestingly, as soon as I have a bit more energy my mood improves tremendously and I find myself motivated to reach out to people and to get stuff done.

Now the only problem here is that I don't know where to start! I don't know what to prioritize! I find that I just want to tackle everything at once. This is kind of leaving my Autonomic Nervous System super-charged and agitated.

Should I take a break and just enjoy life for a change? Or get some much needed stuff done? I'm trying to find the balance between both. So far I've been overdoing it already and need to be better at pacing myself.

I am not running marathons, of course, but I certainly feel better the last couple of days than I have in a long time.

I'm continuing a bland diet, no Lyme meds, and then on Friday I see the GI doctor. After that I'll have a better sense of where we go from here, what might be going on, and what tests need to be done (Ugh, more tests. Pbth.).

I'm trying to just realize that I have no control over the suspension of treatment and the best thing to do is just enjoy the spiritual, emotional, and physical break. It's going to be very, very hard to go back to treatment.

I'll keep you posted!

Blessings,

Emily

Photos: Wigelia earlier this spring. One taken in the daylight, one taken in the evening.